Hannah

Congenital heart disease

Fear to bravery: Hannah’s journey after hidden heart condition diagnosis

After suddenly collapsing at 13, Hannah discovered a hidden genetic heart condition. Now she's choosing courage over fear and helping others do the same.

At 13, Hannah was the energy in every room she entered.  

She sang at the top of her lungs, performed plays for her family, adored animals and was the typical energetic younger sister. 

The now 28-year-old grew up in Kerikeri and had a typical Kiwi childhood, but there were signs something was not right. 

The start of Hannah’s heart journey came long before anyone realised. Around 12, she would take the dog out for a run and come home with skinned knees, having blacked out without warning. “We just thought I was being a klutz,” she says. Her mum even made her wear jeans when running to avoid more grazes. 

The turning point came one evening when Hannah and her sisters were putting on one of their homemade drama productions for the family. In the middle of the performance, Hannah collapsed.  

Initially, everyone assumed she was acting. Then she began making strange noises, and her lips turned blue as the oxygen left her body. 

Her mum, who had been diagnosed with epilepsy at 11, recognised the signs and tried to calm everyone. “It’s fine. She’s just having a fit,” she told the family. Hannah went to bed and was due to see the GP first thing the next morning. 

That night she had three more episodes – losing consciousness, lips turning blue, waking up to her heart “hammering like a freight train”.  

“I was terrified to sleep, but I was so exhausted I did sleep,” she says. The GP noticed something wrong on Hannah’s ECG and urgently referred her and her mum to Whangārei Hospital.

A genetic heart diagnosis that changed her life forever

A genetic heart diagnosis that changed her life forever  

At Whangārei, both Hannah and her mum were hooked up to ECG monitors. The results were confronting. 

They were both diagnosed with Long QT syndrome, a genetic heart rhythm condition that can cause sudden, life‑threatening arrhythmias. 

“That was a really shocking reality because Long QT syndrome is genetic. I'd had that since I was born. And my mum had been misdiagnosed for decades with epilepsy.” 

The blue lips her family had seen were not a seizure. They were a sign her heart had stopped. It had happened four times that night before visiting the GP. 

“It’s just mind-blowing that I survived that.” 

Mum and daughter both in hospital

Hannah was transferred by ambulance to Starship Hospital and admitted to the cardiac ward. 

While she grappled with the shock of being diagnosed with a life-threatening heart condition, her mum was admitted to a ward just "100 paces away" after being taken off her long-term medication and suffering a serious seizure. 

Although they were only metres apart, Hannah and her mum could not visit each other, leaving Hannah’s dad to move between the two wards. 

“I was by myself for a day. That in itself created trauma,” Hannah says. 

On top of that, she was told she would need an ICD (implanted cardioverter defibrillator), which she calls her DFib, and lifelong medication.  

“Every 13‑year‑old girl knows it’s such a vital stage of their life. I’d barely been a teenager and then I was learning I was going to have this heart condition for the rest of my life.” 

Her sisters were soon allowed to visit, and that was when Hannah was overwhelmed with information the night before her procedure. 

“I was told I was having an ICD put in, and learning what an implanted cardiac defibrillator was. I'm like, that's a mouthful to say as a 13-year-old. I just remember looking at these brochures and feeling sick.” 

She was told she would have to take medication for the rest of her life, something that shook her to her core. 

Her sister’s tough love and a new perspective

While Hannah admits she was feeling sorry for herself and retreated, her sisters gave her a dose of tough love and reality. 

Her sister said: “You are lucky to be alive. There are people that are far worse than you.” 

“I didn’t want to hide away from the world, so when I was having a little pity party, she'd be dragging me up by the hand and saying, ‘Come on. Life is made for living.’”   

She physically helped Hannah out of bed and walked her around the ward – a walk that changed her perspective. 

While strolling around the ward, Hannah saw children less than five years old with visible scars that ran down their chests. She found out many of them had undergone open-heart surgery as babies. 

“Seeing them all broke my heart. That’s where I learned it’s not about how hard things are, it’s about how you overcome them and count your blessings.”

Navigating a heart condition and finding a support network

After being discharged and returning home to Northland, Hannah felt she fell between the cracks. She felt too old to fit in with “Heart Kids”, but too young to feel she belonged in adult cardiology clinics. 

Living in Northland had its own barriers. Her cardiologist was in Auckland, and check-ups were harder to come by. 

Because of this, she learned the importance of building a strong network. 

“At a young age, I learned you need at least two or three people as your support network, no matter what stage of life you’re in,” she says. “My family have always been my biggest supporters.” 

She met her best friend Joy, who acted as her “bodyguard” in the playground, warning classmates not to scare her as she had a heart condition. 

“When I became friends with her, it was a few months after being diagnosed with my heart condition. And we've been best friends for over a decade now.  

“She helped me navigate social outings where I didn't want people near me and even navigating high school as well. I wouldn't have to raise my voice because she was my bulldog. She would be absolutely telling people like, ‘Hey, don't give her a fright. She has a heart condition. Yeah, back off.” 

Living with fear and slowly pushing the boundaries

Hannah spent a lot of her teens living with fear. 

Sudden frights are a trigger for Long QT events, so any teenage pranks or loud erratic behaviour felt dangerous. 

“I was almost jumping at every corner and that was setting off my heart,” she says. 

She also had a fear of missing out and lived in protection mode. She was excused from PE class as it was easier to not push her body at all than risk anything going wrong. 

“Everything just seemed terrifying about the world,” she remembers. “I just wanted to wrap myself up in bubble wrap or cotton wool.” 

Then her family stepped in, gently reminding her she had to regain control of her life. 

“They’d say, ‘You can’t wrap yourself in cotton wool. You are young. Yes, it’s horrible that you have this heart condition, but you’re still alive and breathing, which means you can continue to live your life.’” 

That reality check pushed her to test new limits. She started running again and built up to 7km, something she says helped her rebuild trust in her body. 

In October 2025, Hannah embarked on a hike with friends from her church, climbing Duke’s Nose, a volcanic rock summit in Northland – something she says became a powerful turning point in regaining control of her life. 

Despite thinking she couldn’t do the walk, she reached the final climb – a near-vertical rock face with no stairs and no harness and just a metal pole to grip. 

When she reached the summit, she broke down in overwhelming tears of happiness.  

“I wish I could look back and tell 13-year-old Hannah this is not the end of the road for her – that she is going to do so much. She is confident. She is brave. And she can overcome mountains. The only person that’s ever going to hold her back is herself.” 

Listening to her heart and advocating for herself

Nearly 13 years after her first ICD was implanted, she started feeling “weird heart flutters” and knew something wasn’t quite right. 

Despite multiple ECGs showing nothing obvious, she was told by the pacemaker team her device was running normally. 

But her instincts would not let it go. She was told one of the wires connecting her ICD to her heart was losing connectivity and that it was not dangerous. However, Hannah still did not feel right. 

She continued advocating – calling Healthline, going to the emergency department and even calling the ambulance when episodes struck in the night.  

Eventually, she spent three days in Kawakawa Hospital where the results came back: her heart was in a non-sinus rhythm, an irregular pattern that looked “squiggly” instead of showing the usual clean peaks on the tracing.  

“My heart was almost hesitating with every beat,” she says. “That was the fluttery sensation.” 

She opted for a full replacement of her ICD.

Finding connection and sharing hope

The now 28-year-old still has a “glass overflowing” attitude despite her heart condition. 

While frights can be dangerous, Hannah is living with a commitment to not let fear define her life. 

Now she wants to share her story in the hope of finding others with Long QT syndrome and offering hope to people who are struggling on their own journey. 

"I would love to be able to connect with people who have the same condition I have, because I grew up feeling like a one-woman island. 

"If I came across a 13-year-old with a heart condition, I'd tell them, 'This isn't the end. This is the chance for you to be a 2.0. There is so much you can do.' 

"The biggest thing is finding the beauty in what's normal for you. It's not somebody else's normal. It's focusing on yourself and it's making the most of your life because nobody else can live it for you."